HELPING FAMILIES WITH NEEDED CARE: MEDICAID'S CRITICAL ROLE

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by  Committee on Energy and Commerce

HELPING FAMILIES WITH NEEDED CARE:
MEDICAID’S CRITICAL ROLE FOR AMERICANS
WITH DISABILITIES
HEARING
BEFORETHE
SUBCOMMITTEE ON HEALTH
OFTHE
COMMITTEE ON ENERGY AND
COMMERCE
HOUSE OF REPRESENTATIVES
ONE HUNDRED TENTH CONGRESS
SECOND SESSION
JANUARY 16, 2008
Serial No. 110–79
(
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COMMITTEE ON ENERGY AND COMMERCE
JOHN D. DINGELL, Michigan, Chairman
HENRY A. WAXMAN, California JOE BARTON, Texas
EDWARD J. MARKEY, Massachusetts Ranking Member
RICK BOUCHER, Virginia RALPH M. HALL, Texas
EDOLPHUS TOWNS, New York FRED UPTON, Michigan
FRANK PALLONE, JR., New Jersey CLIFF STEARNS, Florida
BART GORDON, Tennessee NATHAN DEAL, Georgia
BOBBY L. RUSH, Illinois ED WHITFIELD, Kentucky
ANNA G. ESHOO, California BARBARA CUBIN, Wyoming
BART STUPAK, Michigan JOHN SHIMKUS, Illinois
ELIOT L. ENGEL, New York HEATHER WILSON, New Mexico
ALBERT R. WYNN, Maryland JOHN B. SHADEGG, Arizona
GENE GREEN, Texas CHARLES W. ‘‘CHIP’’ PICKERING,
DIANA DEGETTE, Colorado Mississippi
Vice Chairman VITO FOSSELLA, New York
LOIS CAPPS, California STEVE BUYER, Indiana
MIKE DOYLE, Pennsylvania GEORGE RADANOVICH, California
JANE HARMAN, California JOSEPH R. PITTS, Pennsylvania
TOM ALLEN, Maine MARY BONO, California
JAN SCHAKOWSKY, Illinois GREG WALDEN, Oregon
HILDA L. SOLIS, California LEE TERRY, Nebraska
CHARLES A. GONZALEZ, Texas MIKE FERGUSON, New Jersey
JAY INSLEE, Washington MIKE ROGERS, Michigan
TAMMY BALDWIN, Wisconsin SUE WILKINS MYRICK, North Carolina
MIKE ROSS, Arkansas JOHN SULLIVAN, Oklahoma
DARLENE HOOLEY, Oregon TIM MURPHY, Pennsylvania
ANTHONY D. WEINER, New York MICHAEL C. BURGESS, Texas
JIM MATHESON, Utah MARSHA BLACKBURN, Tennessee
G.K. BUTTERFIELD, North Carolina ——— ———
CHARLIE MELANCON, Louisiana
JOHN BARROW, Georgia
BARON P. HILL, Indiana
PROFESSIONAL STAFF
DENNIS B. FITZGIBBONS, Chief of Staff
GREGG A. ROTHSCHILD, Chief Counsel
SHARON E. DAVIS, Chief Clerk
DAVID CAVICKE, Minority Staff Director
(II)
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SUBCOMMITTEE ON HEALTH
FRANK PALLONE, JR., New Jersey, Chairman
HENRY A. WAXMAN, California NATHAN DEAL, Georgia,
EDOLPHUS TOWNS, New York Ranking Member
BART GORDON, Tennessee RALPH M. HALL, Texas
ANNA G. ESHOO, California BARBARA CUBIN, Wyoming
GENE GREEN, Texas HEATHER WILSON, New Mexico
Vice Chairman JOHN B. SHADEGG, Arizona
DIANA DEGETTE, Colorado STEVE BUYER, Indiana
LOIS CAPPS, California JOSEPH R. PITTS, Pennsylvania
TOM ALLEN, Maine MIKE FERGUSON, New Jersey
TAMMY BALDWIN, Wisconsin MIKE ROGERS, Michigan
ELIOT L. ENGEL, New York SUE WILKINS MYRICK, North Carolina
JAN SCHAKOWSKY, Illinois JOHN SULLIVAN, Oklahoma
HILDA L. SOLIS, California TIM MURPHY, Pennsylvania
MIKE ROSS, Arkansas MICHAEL C. BURGESS, Texas
DARLENE HOOLEY, Oregon MARSHA BLACKBURN, Tennessee
ANTHONY D. WEINER, New York JOE BARTON, Texas (ex officio)
JIM MATHESON, Utah
JOHN D. DINGELL, Michigan (ex officio)
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C O N T E N T S
Page
Hon. Frank Pallone Jr., a Representative in Congress from the State of
New Jersey, opening statement .......................................................................... 1
Hon. Nathan Deal, a Representative in Congress from the State of Georgia,
opening statement ................................................................................................ 3
Hon. Gene Green, a Representative in Congress from the State of Texas,
opening statement ................................................................................................ 4
Hon. Tim Murphy, a Representative in Congress from the State of Pennsyl-
vania, opening statement .................................................................................... 5
Hon. Lois Capps, a Representative in Congress from the State of California,
opening statement ................................................................................................ 6
Hon. Michael C. Burgess, a Representative in Congress from the State of
Texas, opening statement .................................................................................... 8
Prepared statement .......................................................................................... 9
Hon. Tammy Baldwin, a Representative in Congress from the State of Wis-
consin, opening statement ................................................................................... 11
Hon. Jan Schakowsky, a Representative in Congress from the State of Illi-
nois, opening statement ....................................................................................... 11
Hon. Darlene Hooley, a Representative in Congress from the State of Oregon,
opening statement ................................................................................................ 13
Hon. Anna G. Eshoo, a Representative in Congress from the State of Cali-
fornia, opening statement .................................................................................... 14
Hon. Hilda L. Solis, a Representative in Congress from the State of Cali-
fornia, opening statement .................................................................................... 14
Hon. John D. Dingell, a Representative in Congress from the State of Michi-
gan, opening statement ....................................................................................... 16
Hon. Edolphus Towns, a Representative in Congress from the State of New
York, prepared statement .................................................................................... 18
Hon. Danny K. Davis, a Representative in Congress from the State of Illinois,
prepared statement .............................................................................................. 20
WITNESSES
Diane Rowland, executive director, Kaiser Commission on Medicaid and the
Uninsured ............................................................................................................. 22
Prepared statement .......................................................................................... 25
Stephanie Thomas, national organizer, co-director, the Institute for Disability
Access, ADAPT ..................................................................................................... 43
Prepared statement .......................................................................................... 45
Ralph Gronefeld, president and chief executive officer, Rescare ......................... 83
Prepared statement .......................................................................................... 85
Celine Fortin, associate executive director, the Arc of New Jersey ..................... 89
Prepared statement .......................................................................................... 91
Aileen McCormick, president and chief executive officer, Amerigroup Texas,
Incorporated .......................................................................................................... 105
Prepared statement .......................................................................................... 107
Julie Beckett, director of national policy, Family Voices ..................................... 125
Prepared statement .......................................................................................... 128
SUBMITTED MATERIAL
AARP, submitted statement ................................................................................... 148
Autism Speaks, submitted statement .................................................................... 164
National Council on Independent Living, submitted statement .......................... 169
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HELPING FAMILIES WITH NEEDED CARE:
MEDICAID’S CRITICAL ROLE
FOR AMERICANS WITH DISABILITIES
WEDNESDAY, JANUARY 16, 2008
HOUSE OF REPRESENTATIVES,
SUBCOMMITTEE ON HEALTH,
COMMITTEE ON ENERGY AND COMMERCE,
Washington, DC.
The subcommittee met, pursuant to call, at 10:05 a.m., in room
2123 of the Rayburn House Office Building, Hon. Frank Pallone,
Jr. (chairman) presiding.
Members present: Representatives Towns, Eshoo, Green, Capps,
Baldwin, Schakowsky, Solis, Hooley, Dingell, Deal, Wilson, Buyer,
Pitts, Murphy and Burgess.
Staff present: Bridgett Taylor, Purvee Kempf, Amy Hall, Yvette
Fontenot, Hasan Sarsour, Melissa Sidman, Robert Clark, Erin
Bzymek, Lauren Bloomberg, Brin Frazier, Brandon Clark, and
Chad Grant.
OPENING STATEMENT OF HON. FRANK PALLONE, JR., A REP-
RESENTATIVE IN CONGRESS FROM THE STATE OF NEW JER-
SEY
Mr. PALLONE. The subcommittee hearing is called to order.
Today we have a hearing on ‘‘Helping Families with Needed
Care: Medicaid’s Critical Role for Americans with Disabilities.’’ I
will recognize myself initially for an opening statement.
Let me begin by welcoming everyone back from our Christmas
and New Year’s break. Today we are meeting—this is actually our
first hearing of the new year and I realize how important this hear-
ing is to so many people.
It goes without saying that today’s hearing is long overdue. I now
there are many people who are in the audience today who have
been calling for this hearing for many months and even years, and
I want to thank you for all the hard work you do to advocate on
behalf of the disabilities community. Today’s hearing is about you
and your families. It is about ensuring you have the services and
support you need to remain independent members of society.
Over the years Medicare has enabled millions of Americans with
a wide range of disabilities to live independent lives by providing
medical care as well as specialized support and services, but in
spite of Medicaid’s success, over the past year the Bush administra-
tion has launched an all-out attack on Medicaid, issuing a constant
stream of regulations that seek to reduce the scope and breadth of
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the Medicaid program, thereby restricting its ability to provide for
disabled Americans.
These harmful regulations would, for example, restrict States’
ability to provide rehabilitative services including those designed to
enable individuals with disabilities to improve their mental or
physical capacities and remain out of an institution; also, eliminate
the ability of schools to provide administrative services such as en-
rollment, eligibility counseling and referrals for Medicaid children,
and most recently, restrict States’ ability to help manage the care
and support services that are crucial to helping Medicaid bene-
ficiaries live independently.
The combined effect of these regulations, should they be imple-
mented, would be a loss of billions of dollars for State Medicaid
programs, thereby putting in jeopardy critical services that millions
of Medicaid beneficiaries rely upon.
Now, fortunately, in the recently passed CHIP extension, we
were able to put a moratorium on the school-based administrative
and transportation services rule as well as the rehabilitation serv-
ices regulation but that was only a temporary measure to halt the
administration’s attack. If these rules and regulations are eventu-
ally implemented, they will have a disastrous impact on our safety
net system’s ability to provide services for disabled communities
across the Nation. I am looking forward to hearing from our wit-
nesses today about exactly what the impact of these regulations
would be should they go into effect.
Today is not only about the administration’s misguided policies.
We also will be discussing a number of bills today that can have
a positive impact on disabled Americans by strengthening Medicaid
and offer alternatives to provide services for disabled Americans so
they can remain in their communities. One proposal is legislation
I introduced with Chairman Dingell and Senator Kennedy, the
Community Living Assistance Services and Supports Act, or the
CLASS Act.
Currently, there are 10 million Americans in need of long-term
services and support, and that number is expected to increase to
nearly 15 million by 2020. Most private-sector disability or long-
term care insurance plans are constrained in the insurance protec-
tion that can offer at an affordable price and neither Supplemental
Security Insurance nor Old Age, Survivor and Disability Insurance
programs have any benefit differentials related to the extent and
character of the disability.
Because of this, Americans who have, or develop, severe func-
tional impairments can only access coverage for vital services
through Medicaid. These services, however, including housing
modifications, assistive technologies, transportation and personal
assistance services are critical to their independence, and this fact
creates perverse incentive, forcing many to live in poverty and re-
main unemployed so that they can qualify for Medicaid. With Med-
icaid paying 50 percent of the cost, increased expenditures on long-
term services are expected to add $44 billion annually to the cost
of Medicaid over the next decade.
And as America continues to age, we are faced with an impend-
ing crisis in long-term care. With the introduction of the CLASS
Act last year, I aimed to offer a new approach that builds upon our
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existing safety net system and helps our elderly and disabled fi-
nance the long-term care they need to remain active and productive
members of their communities. This bill offers a new alternative
path. It will create a national insurance program to help adults
who have or develop functional impairments to remain independent
and employed, and it also gives individuals added choice and access
to supports without requiring them to become impoverished to
qualify.
I think the CLASS Act is an important step in the evolution of
public policy because it is a framework based on the principles of
independence, choice and empowerment.
We also are going to hear about the Community Choice Act, and
I see a lot of the orange shirts that indicate—we know there is a
lot of support for that. That, as you know, was introduced by Con-
gressman Davis. It aims to redirect the focus of Medicaid services
from institutions to home and community settings, giving eligible
individuals equal access to community-based services as to institu-
tional supports and enabling people to make their own choices
about the care that they receive.
And finally, I also wanted to recognize that Mrs. Capps has an
important bill that she has introduced, the Direct Support Profes-
sional Fairness and Security Act, which will provide enhanced Fed-
eral Medicaid funding to those States that agree to match vol-
untary private direct support professional wages to the level of pay
for comparable State employees.
Now, as you know, this hearing is not specifically on any of the
bills, even those these three bills obviously will be highlighted, and
other ideas will certainly come up and we certainly welcome them,
and I again want to commend my colleagues for the work on these
issues and all the bills that they have put forward and thank the
witnesses.
I now recognize the ranking member, Mr. Deal.
OPENING STATEMENT OF HON. NATHAN DEAL, A REPRESENT-
ATIVE IN CONGRESS FROM THE STATE OF GEORGIA
Mr. DEAL. Thank you, Chairman Pallone, for holding this very
important hearing today.
The Medicaid Program serves almost 10 million individuals with
disabilities so I am glad we are taking an opportunity to evaluate
possible reforms to improve the care of this population. Addition-
ally in 2005, Medicaid spent $120 billion on individuals with dis-
abilities, so we must be mindful of the most effective way to admin-
ister our resources.
For this reason, I have long been a proponent of community-
based services in Medicaid. As part of the Deficit Reduction Act, I
supported provisions such as cash and counseling, Money Follows
the Person, and home and community-based care service. These
programs provide States additional options for providing Medicaid-
covered services to beneficiaries. Many believe community-based
care is a cost-effective method, which I agree with, which not only
can save money but also provides better quality care. As someone
who with my wife, we took in our elderly parents, my mother lost
a leg and was in a wheelchair and we cared for them for 8–1/2
years in our own home so I am very well aware of the importance
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of being able to be care provided in an environment that is consid-
ered to be your home.
For instance, some States have achieved significant savings by
transitioning beneficiaries out of nursing home facilities into com-
munity programs like Money Follows the Person and we have a
very successful program in my hometown called Randy’s House,
named after the son of a close personal friend of mine who was in-
jured when he was a very small child and has been confined and
is able to now live in an independent living environment with as-
sistance, and this is the kind of program that I think we all need
to encourage.
I have also signed on as a cosponsor of H.R. 1621, the Commu-
nity Choice Act, which, as you know, seeks to provide individuals
with disabilities increased access to community-based attendant
services through the Medicaid program. I look forward to the testi-
mony by our witnesses about some of the benefits of this legisla-
tion.
We need to continue to pursue reforms which reverse Medicaid’s
institutional bias that has denied Americans with disabilities ac-
cess to care in their homes. I look forward to the testimony of the
witnesses today about ways to address this problem and the eval-
uation of some of the programs that we have already created.
I thank all of you for your attendance and look forward to the
testimony of the witnesses, and with that, Mr. Chairman, I yield
back.
Mr. PALLONE. Thank you, Mr. Deal.
Next we have our vice chair, the gentleman from Texas, Mr.
Green.
OPENING STATEMENT OF HON. GENE GREEN, A
REPRESENTATIVE IN CONGRESS FROM THE STATE OF TEXAS
Mr. GREEN. Thank you, Mr. Chairman, for holding the hearing
today on the role of Medicaid and Americans. This is a topic many
members of our audience have been fighting for many years, and
I am happy we are taking this important first step to addressing
the challenges that individuals with disabilities face when access-
ing care.
Medicaid is the primary way we finance and deliver community-
based health and long-term services to needy children and adults
with disabilities. Medicaid offers many services that are not cov-
ered under traditional employer-based or private insurance. For
those individuals with disabilities, Medicaid is the only way they
can access the service they need. In some cases, the States have
the ability to deliver community-based services to children and in-
dividuals with disabilities. We hear today that many people prefer
community-based services because it offers them the opportunity to
remain independent in their own homes. This is an important fact
that many of us who are not disabled take for granted. For those
individuals, having even a small amount of freedom is priceless.
The issue we face with the current Medicaid system regarding
individuals who are disabled is that they are forced to enter insti-
tutionalized care for a period of time before they can access com-
munity-based services or they are placed on waiting lists by States,
sometimes as many as 10 years. When faced with this daunting
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